Wait... what?
So I've had a rather difficult week. I received a phone call that confirmed a diagnoses that my doctor has been considering. She sent me for blood work for a long list of issues. She looked at my history, covering two doctors, a neurologist, CAT scans, previous blood work, emergency room visits, medications... and after many blood tests to rule out major issues, I was diagnosed.. or labeled with Fibromyalgia.
I hesitate to type diagnose... because for many they doubt it is real. They state it's physiological a form of hypochondria. These assumptions are based on the reality that there is no single identifiable cause for the amount and verity of pain a person goes through, and it can't be treated with surgery or medication. Therefore many dismiss the condition as a mental battle.
However they have studied it over many years and have been able to prove it does exist. Why, however, is still up for debate (as is many questions over why any disease) Current theories involve a damage or underdeveloped Vagas Nerve that runs from the brain down through the spine into each major organ of the body. Others are that it is several smaller issues that combine causing complex reactions to the person making it very individual. The main current accepted understanding is the hyper sensitive nervous system.
Regardless of why, it is real. Sadly it is misdiagnosed often- This past week I've been pouring myself into study. Learning all I can about this that I have been identified with. There is a Classic Fib diagnoses- but also up to 2/3 misdiagnoses- sadly patients who are living with pain and fatigue that can be treated because it's something else (thyroid, arthritis, etc)
Here are some readings:
National pain report-
NCBI-
Intergrative Practitioner
Moving on from a fearful defense position, after much reading I have been diagnosed with the Classic form of Fibromyalgia as it is the last possible condition. I have been in and out of doctors for 12 years for many problems. Specialist, scans, blood work, I am so tired of blood work. However in the end after all the blood work, all the exams, my doctor leaned over and touched my neck and I could have slapped her. The pain went through my shoulders and up the back of my head. I suffer with migraines and I'm very protective of my head. After several other spots she checked randomly in and out of others (some hurt, some did not) She informed me I hit each spot called a "Pressure Point" or "Tender Point" of my body, common in Fibromyalgia.
It's been a difficult week. I wrestled with who to trust to tell. I wanted a support circle, a group of others who could check on me, be my team. I still am trying to fully create this. I suppose not being outright called a liar and being believed is the best thing at first. My parents accepted it readily, as I later found out my mother had been in the process of exclusion tests for fibro when they discovered something else. So she was aware of it. A girlfriends mother has the condition, and even my in laws who I feared criticizing as she just retired from a life long RN career and her husband retired from being a Radiologist- both paused for a moment, then agreed that it made the most sense to what I go through.
Still I worry. A counselor worried first about my husband losing his identity becoming my care giver. Now I battle feeling a huge burden and the guilt that is going to ruin life. I always wanted to be loved for who I am, accepted and desired, to be with. Now I just see a grey life of dutiful behavior managing pain and symptoms for something there is no cure. It feels like a death sentence but worse..because I don't die...I keep living. Days come and go with no end, the pain always here, and the total fear of a flare around the corner condemning me to never make plans, be unreliable, living a half life.
The reality as the counselor also pointed out- I don't look sick. The professional knows about fibromyalgia , they asked us hard questions trying to help us get prepared. Knowing I am sick, but don't look sick... I have to be prepared.
I'll be honest...I'm not prepared, I don't want this, I am scared. I am angry.
A woman approached me on Sunday- said she heard (my husband talks about it more then I do...it does NOT help) said she understood because she too suffers. She asked how I was... I told her I was scared, I was angry... she understood..I saw it in her eyes. Our conversation was cut off by others... but questions run in my mind...
Now what?
What do I do?
So here I am. Questions, wanting answers, being given a diagnoses with a limited hope...
Let's see where this takes us.
I hesitate to type diagnose... because for many they doubt it is real. They state it's physiological a form of hypochondria. These assumptions are based on the reality that there is no single identifiable cause for the amount and verity of pain a person goes through, and it can't be treated with surgery or medication. Therefore many dismiss the condition as a mental battle.
However they have studied it over many years and have been able to prove it does exist. Why, however, is still up for debate (as is many questions over why any disease) Current theories involve a damage or underdeveloped Vagas Nerve that runs from the brain down through the spine into each major organ of the body. Others are that it is several smaller issues that combine causing complex reactions to the person making it very individual. The main current accepted understanding is the hyper sensitive nervous system.
Regardless of why, it is real. Sadly it is misdiagnosed often- This past week I've been pouring myself into study. Learning all I can about this that I have been identified with. There is a Classic Fib diagnoses- but also up to 2/3 misdiagnoses- sadly patients who are living with pain and fatigue that can be treated because it's something else (thyroid, arthritis, etc)
Here are some readings:
National pain report-
NCBI-
Intergrative Practitioner
Moving on from a fearful defense position, after much reading I have been diagnosed with the Classic form of Fibromyalgia as it is the last possible condition. I have been in and out of doctors for 12 years for many problems. Specialist, scans, blood work, I am so tired of blood work. However in the end after all the blood work, all the exams, my doctor leaned over and touched my neck and I could have slapped her. The pain went through my shoulders and up the back of my head. I suffer with migraines and I'm very protective of my head. After several other spots she checked randomly in and out of others (some hurt, some did not) She informed me I hit each spot called a "Pressure Point" or "Tender Point" of my body, common in Fibromyalgia.
It's been a difficult week. I wrestled with who to trust to tell. I wanted a support circle, a group of others who could check on me, be my team. I still am trying to fully create this. I suppose not being outright called a liar and being believed is the best thing at first. My parents accepted it readily, as I later found out my mother had been in the process of exclusion tests for fibro when they discovered something else. So she was aware of it. A girlfriends mother has the condition, and even my in laws who I feared criticizing as she just retired from a life long RN career and her husband retired from being a Radiologist- both paused for a moment, then agreed that it made the most sense to what I go through.
Still I worry. A counselor worried first about my husband losing his identity becoming my care giver. Now I battle feeling a huge burden and the guilt that is going to ruin life. I always wanted to be loved for who I am, accepted and desired, to be with. Now I just see a grey life of dutiful behavior managing pain and symptoms for something there is no cure. It feels like a death sentence but worse..because I don't die...I keep living. Days come and go with no end, the pain always here, and the total fear of a flare around the corner condemning me to never make plans, be unreliable, living a half life.
The reality as the counselor also pointed out- I don't look sick. The professional knows about fibromyalgia , they asked us hard questions trying to help us get prepared. Knowing I am sick, but don't look sick... I have to be prepared.
I'll be honest...I'm not prepared, I don't want this, I am scared. I am angry.
A woman approached me on Sunday- said she heard (my husband talks about it more then I do...it does NOT help) said she understood because she too suffers. She asked how I was... I told her I was scared, I was angry... she understood..I saw it in her eyes. Our conversation was cut off by others... but questions run in my mind...
Now what?
What do I do?
So here I am. Questions, wanting answers, being given a diagnoses with a limited hope...
Let's see where this takes us.
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